I don't know if I have TOS. I've seen tons of docs, and nobody has a clue as to what is going on. EVERYTHING has been ruled out. even the TOS surgeons are willing to do my procedure but aren't convinced I have TOS.

My coordination is perfect. My strength is intact. No discoloration, temperature changes, and overall minimal symptoms in my arms/hands at all.

Another thing is that I don't get 'flares' like many people describe on these boards. My pain is always bad, 8/10 constantly unless I'm lying down to take me to a 5/10. If I raise my hands above my body for an extended period of time (like during an MRI) I'll be at a 9/10 for the rest of the day, but that's as close to a flare experience as I know.

Here's a timetable of my symptoms, if anyone else out there has anything similar, I'd really love to know.


Current symptoms – (bilateral)
• Severe dull, achy pain in scapula area, trapezius, sides of neck, occasional hand and feet.
• Occasional muscle twitches, numbness, and tingling in arms, legs, hands, and feet.
• Occasional visual floaters and occasional headaches.
• Occasional mild lower back ache.
-extreme tightness in throat when tilt head back.

-Also, when I tilt my head to one direction, I feel tingling in the opposite side's hand and fingers.

September 2011 – Slight discomfort in left scapula area – first noticed while wearing heavy backpack and riding small mechanical scooter for 1 mile/day. Scapular winging/snapping/grinding present. (after stopped wearing backpack/riding scooter, discomfort only felt while in the sitting position)

July 2012 – Left scapula discomfort increasing, left side of neck extremely tight. Trapezius has achy pain and is always flexed because of assumed overcompensation.

September 2012- Severe dull. achy pain in both left scapula and left side of neck.

November 2012 - Symptoms started on right side, in same order but at 10x the pace. By the end of November the right side of neck and right scapula felt the same as the left

December 2012 – Misdiagnosed with suprascapular nerve impingement at spinoglenoid notch and proceeded with left shoulder arthoscopic subacromial decompression

--no positive result from surgery to date- but now have moderate weakness in various movements.

January 2013 – Pain progressed to the point where I started lying down all day, only leaving to go to the gym for an hour a day, physical therapy, and doctor appointments.

February 2013 – Began experiencing warmth going down my arms. Intense stretching sensation going to my finger tips.

March 2013 – Bilateral leg twitching started in thighs, glutes, and calves.

April 2013- Pain got severe to the point of taking Percocet, even lying down doesn’t alleviate problems like it used to.

-Twitching in legs became more frequent, and occasional pain in feet
- Diagnosed with Thoracic Outlet Syndrome, but disputed amongst many
specialists.

May 2013 – Frequent pain in feet- big toe, in the heel, side, and on the top of the foot.- Right more than left.

Mid-May 2013 – a few days of pain in hand. Mostly along thumb and pinky. –Right more than left.
- Bilateral foot pain intensifies. Legs feel stiff, can’t crouch for more than 10 seconds. (in the past I would frequently crouch when petting dog or picking up something)
- Started waking up from naps/sleep with numb hands and arms-a few times.
- Lower back starting to ache


I have tried: (nothing has worked)
Massage Therapy, Acupuncture, Chiropractic, Cortisone injections, Lyrica, Neurontin, surgery, rest, Scalene Block, Cervical Epidural, PT for over a year (4 different specialists- 4 different approaches)

Pain continues to get worse. Extensive posture training but nothing will stick. Scapulas still wing out and rotate forward, forward head posture unless conscious of it.

What gives slight relief: lying down or pushing head back against high chair, car seat, bed, ground, etc.